Help us to understand when and how ALS begins

Recruiting unaffected family members of genetic/familial ALS

Study Name
Pre-fALS (Pre-symptomatic Familial ALS)
Michael Benatar, MD, PhD and Joanne Wuu, ScM
Study Type
Observational, Longitudinal, Prospective, Biomarker
Eligible Population
  • Unaffected individuals with a family history of ALS and who may be at genetic risk for developing ALS
  • Individuals living in the United States or Canada
Study Purpose/Goals

(a) Characterize the pre-symptomatic phase of ALS

(b) Develop biomarkers that may be used to detect pre-symptomatic disease or even permit the prediction of if/when a gene mutation carrier will develop ALS (or FTD)

(c) Prepare for a disease prevention trial.

  • Genetic testing (with choice whether or not to learn the results)
  • Genetic counseling
  • 3-day study visits in Miami every 12-24 months
      • Family and medical history review
      • Collect blood, urine, and CSF fluid (CSF optional)
      • Brain MRI
      • Neurological exam
      • Full neuropsychological exam
      • Breathing testing
      • Fine motor skills testing
      • Epidemiological review
      • Surveys
  • 15-minute phone call check-ups every 3-4 months alternating with at-home remote visits consisting of questionnaires as well as blood and urine collection

Join our family - together, we can change the course of this disease.

Join our family

Together, we can change the course of this disease.